Clare's story

Clare was a healthy 50-year-old when she had her SCAD in January 2016. She had a healthy diet, had cut out caffeine years ago and had no cardiac risk factors.

She was at her desk at work and was eating carrot sticks when she felt like one of them was stuck in the middle of her chest but didn’t think it was anything heart-related. That evening she was going out to dinner with a friend she hadn’t seen for a long time but rather than walking, she wanted to go in the car. She believes in retrospect, this should have been a sign that something was wrong as normally she’s happy to walk.

Later that evening she had some Gaviscon, thinking that would ease the pain. She slept for a couple of hours but then woke at 3am with the same chest pain and pains in her arm.

She rang 111 and an ambulance was sent. Her ECG has always been slightly abnormal, but the paramedics, obviously were not aware of this and saw an abnormality they were a little concerned and so decided to take her to hospital anyway, just in case, telling her not to worry and that she’d likely be going home soon. This was also the case in A&E, where the doctors thought ECGs were OK and that it was nothing to be concerned about but they would take routine blood tests.

However, once the troponin results came back, staff moved her into the trauma room and she heard them discussing her condition with her husband, Tom, which she found quite worrying.

Eventually Clare had an angiogram and SCAD was diagnosed. Giving her the normal cocktail of heart medications, the doctors told her they knew nothing about SCAD and suggested she sign up for the research project at Leicester.

Tom and her children, Joe and Rebecca, reacted to Clare’s heart attack with disbelief and shock. Joe was due to travel to New Zealand for three weeks to be best man at a wedding, and he was all for cancelling. Clare managed to persuade him to go, however, but it was a difficult decision for them.

A day after she was discharged, Clare was in pain again and went to the hospital, where troponin tests were done. The results were lower than before, but still elevated. During her stay in hospital her blood pressure and heart rate dropped dramatically and she felt really poorly. She was moved to a room on her own, given oxygen and heard the staff tell someone to call her family. At that point, Clare thought her “number was up”.

Over the next day or so her heart rate and blood pressure started to recover and was eventually discharged.

She was later told there was little damage to her heart and to get on with her life. When she asked about being referred to cardiac rehab, she was told “There’s no point – they’ll wrap you in cotton wool.”

Giving her the normal cocktail of heart medications, the doctors told Clare they knew nothing about SCAD and suggested she sign up for the research project at Leicester.

Finding support

Feeling isolated and abandoned, Clare was given no information about heart attack or how to recover. She was given the impression that she was asking medics too many questions. She eventually found some information on the Papworth Hospital website.

She then found the Beat SCAD website and made contact with trustee Karen Rockell and was able to ask lots of questions. She also managed to get a referral to see SCAD specialist Dr Abi. “All this gave me the confidence I should have got from cardiac rehab,” she said.

Clare joined the Facebook support group in March 2016 and says she has benefited from sharing and talking to people who have had the same diagnosis and who have real empathy for what you’re going through.

Returning to work

Returning to work two months after her SCAD was stressful. She had a phased return to her three-day-a-week job in finance at a doctor’s surgery, but very little of her work had been done while she’d been off sick, so she was very busy and sticking to shorter hours was hard. Clare would definitely recommend a phased return: “Doing it gradually helps to get your head back into work mode.”

Clare would definitely recommend a phased return: “Doing it gradually helps to get your head back into work mode.”

Fundraising

Five months after her SCAD, she and her family attended the 2016 Beat SCAD Walk. She set up a Total Giving page to raise money for Beat SCAD. “The charity has been set up by people who have the condition to help other SCAD patients. Without it, with the little information I got from doctors, I wouldn’t be so well informed,” said Clare.

She and her family and supporters raised around £7,000, a fantastic amount, which included more than £2,000 of match funding and donations from Savills a client of Tom’s, Barclays, where her future son-in-law James works, and Costa, where Tom works.

Getting the match funding wasn’t as hard as some people may think. “You have to know someone who works for the company and they can apply, as long as they are part of the fundraising. If a charity isn’t yet on the list of supported organisations, all most companies require is the charity number and a letter from the charity,” explained Clare. “You have to be lucky enough for them to consider your chosen charity and thankfully I was!”

Clare said she felt “humbled and overwhelmed” by the support and the fact that so many people cared enough to donate.

Not content with 2016’s fundraising, Clare and her family arranged another event in March 2017.

The wine and cheese tasting event was attended by 60 people and raised £880. Boutinot, a wine company her son Joe used to work for, and Amps Fine Wines in Oundle very kindly covered the cost of supplying the wine. The Pantry Door in Bugbrooke, Northampton, provided the tasty cheeses.

Post-SCAD positives

Just over a year after her SCAD, Clare is feeling good. She said it catches her now and again when doing things she used to do easily, such as walking up a hill. “It’s like driving an older car and having to change down a gear when you wouldn’t have to when driving a new car,” she said.

She joined the gym in the April after her heart attack to try and get fitter as she believes if she were to have another SCAD, starting from a fitter place would make her recovery easier.

Clare is rightly proud of her fundraising activities. She said it was a satisfying and positive experience creating and managing the wine-tasting evening gave her a boost, knowing she is capable of doing something like this.

She’s also pleased to know that she can keep her sense of humour and remain positive after such a traumatic experience.

Clare was given no information about heart attack or how to recover. She was given the impression that she was asking medics too many questions.